Friday, April 20, 2012

Special Needs Spotlight: Malina

Hi Everyone! My name is Amanda. I’m a happily married mother of three
beautiful children. I work and attend
school full time and my husband is a stay at home dad and about to start school
as well. Like most other large families,
our house is usually humming with barely controlled chaos. Our youngest daughter, Malina, was born with
a rare chromosomal deletion. Basically,
she is missing the bottom part of her 13th chromosome and attached
to that is an extra copy of her X chromosome.
She just turned two this past February and is so darned cute you can’t
help but smile when you see her (I’m not biased am I?) Ok… let’s get started.

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Miggy:Amanda, you said that Malina was diagnosed a
couple weeks after she was born, can you take me back to that day?Did you know or suspect anything was wrong
before that day? Can you compare those first thoughts and feelings with
how you feel now?

Amanda:The day we found out about her deletion was
actually not as eventful as you would think. I was still grappling with all the information that was being thrown at me
that I didn’t have a lot of time to sit and ponder what it all meant (I think it
was blessing in some ways).Malina was
admitted into NICU on her second day of life and stayed there for eight
weeks.I can’t even tell you all of the
tests they ran on her trying to figure out what was going on.They finally were able to pinpoint the
deletion with a test called micro-array.The geneticist sat us down and explained her chromosomes to us, pictures
and all.He then told us that because
her deletion was so rare, he would learn more from us than we would ever learn
from him.That shocked me.You mean every question I had poised on the
tip of my tongue would be met with an “I don’t know?”Yep.That’s exactly what it meant.

I didn’t suspect anything during my
pregnancy with Malina.My last two were
easy labors giving birth to healthy babies.I expected nothing less from this one. How wrong we were and didn’t even know
it!After ten hours and two epidurals,
Malina Anne finally arrived! I knew something wasn’t quite right
the moment she was born.My husband videoed
her birth and amidst all the noise you can hear me asking the doctors and
nurses what was wrong.To this day I
can’t really put my finger on how I knew.It was just a feeling I had, almost instinctual, that something was
wrong.

When I compare my thoughts then to
now, the biggest difference is peace and acceptance.I’ve made peace with the fact that I don’t
know what Malina’s future holds.I don’t
need all the answers right now; we handle questions and issues as they come up.I accept that Malina may never walk or tell
me she loves me.She may never play
sports or take gymnastics.And you know
what?That’s ok.If one day she walks and talks that would be
fantastic.If not, that’s ok too.Malina is special because she is MY daughter,
not because of what she can accomplish.

Amanda:Last April, due to respiratory issues and the
beginnings of congestive heart failure, she had tracheotomy surgery.She requires ventilator and oxygen support
around the clock.She has several
medicines that must be given at specific times of day, chest PT and inhalers to
keep her lungs clear, and she does daily speech, occupational and physical
therapy to learn how to hold up her head, sit up, etc.Her schedule is full and our family has
adjusted.We don’t go out a lot as a
family because it takes so long to load all of her equipment.We also try to limit her exposure to the
outside because she is very sensitive to other environments and tires
easily.A 45-minute car ride can take
her all of the next day to recover from.I miss not going out as a family.I would love to take trips to the zoo, a weekend at the beach, etc. but
I worry that it would be too much for her.

Miggy:What are the biggest worries you face for
Malina?

Amanda:I worry about who will provide long-term care
for her in the event that we can’t.No
one else in our family is trained to care for her like we do.We have nurses that come during the week to
assist with the bulk of her medical needs, but even that may not be permanent.

I also worry that I’m not doing
enough for her.Am I asking the doctor’s
the right questions?Did I tell them all
of her symptoms?What if I missed an
important one?It’s so easy to get lost
in the details and medical symptoms that you forget she is just a baby and that
babies get sick.I feel like I need to
watch her 24/7 for some small sign that she is getting sick, or having trouble
breathing.We have numerous machines
that would alert us in the event of an emergency, but sometimes I still can’t
relax.

Miggy:How can people best approach or respond to
Malina? Is there something you wish other people knew so as to avoid awkward or
hurtful situations?

Amanda:I understand that it’s hard not to stare when
you see this huge double stroller filled to capacity with all kinds of medical
equipment and this little baby in the middle of it all with tubes and wires
surrounding her.While I understand
people’s curiosity, I wish they would take that extra step to come over and say
hello.Comment on her pig tails, tell me
how cute she is.Something!Even a smile would be welcome.I don’t think that people realize how hurtful
it can be to stand and stare at us while we suction her or we’re dealing with
her vent alarm going off.If you’re
curious, please come up and ask questions.I enjoy showing off all of the medical jargon I’ve learned over the past
two years.Like other parents, I enjoy
bragging about what a sweet little girl she is.

Miggy:Tell us something you love about Malina.
A special story, a personality trait or just something others might not
know.

Amanda:I don’t know where to start; I love
everything about her!Watching her bloom
since the trach surgery has been a huge blessing.We didn’t realize before how much energy she
put towards breathing.Now that she
doesn’t have to, she has time for other things.She LOVES chewing on her toes!A
lot of times you see her she’s either talking to her hand, her favorite monkey
or imitating some cheerleader move that will enable her toes to reach her
mouth.

She’s started communicating in her own
way.Her nurses have learned what she’s
thinking by a look, movement or cry that she’ll give.She’s quick to let you know when she’s done
with her therapy!She can be stubborn
when she wants to be and she’s got a little temper on her that cracks me up
whenever I see it.

Miggy:What is the biggest lesson you’ve learned
since becoming a special needs mom?

Amanda:What’s
the biggest lesson? Wow…that’s a tough
one. It’s not one big lesson so much as
a bunch of smaller lessons that came together and changed the person I was
before she was born. I’m not the same
person I was two years ago. I’ve learned
how to be a patient advocate and speak my mind about what I think is best for
her. I’ve learned not to take the small
moments for granted. I’ve learned what a
wonderful father my husband is. Malina
has changed me in more ways than I ever could have done by myself. I believe she has made me a better person,
certainly a better mother. This isn’t a
situation I would have pictured for our family, but I think we’re doing a
pretty good job. I’m thankful for each
day we have together.

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Amanda thank you for your wonderful spotlight and for sharing your beautiful Malina with us. I love what you said about the biggest difference between when you first found out about Malina and now is "peace and acceptance"... yeah, I get that. And once again I love that you talked about how you just knew... those motherly instincts are no joke. Thanks again!

As always, if you or anyone you know would be interested in being spotlighted please email me at thislittlemiggy at gmail dot com.

Another great post on another amazing kiddo! Thanks for these spotlights. They usually make me smile and cry all at once, and inwardly breathe a sigh of relief that there are lots of moms who have the same feelings I do. Thank you!

Amanda, you said you don't know exactly what to expect in your journey with Malina because her chromosomal deletion is a rare one. I also have a special needs son whose journey was/is something of a mystery as well. He had obvious difficulties from birth, but genetic testing didn't show up any known syndrome. Although our situations aren't the same, what IS the same is that we never really know/knew what to expect in his development either. He is a young adult now.

Thank you so much for telling us about your little sweetheart. I really enjoyed hearing about her. Thank you, too, Miggy!